Recognise Polycythaemia vera as a disability

Polycythaemia vera is a rare incurable condition that in the last few years was recognised as a slow growing chronic cancer.

This does not come under any special rules with PIP as it is not a aggressive terminal illness but the symptoms are life changing and can be fatal in the short term as well as the long term and sufferers do not know how it will affect them from one day to the next.

However the DWP does not recognise this condition as a disability despite its profound effects and many sufferers are refused claims to much needed benefits that can help them when they become too ill to work.

To name a few symptoms...

Chronic Fatigue.

Bone pain and gouty arthritis.

Headaches and vision problems

stomach ulcers

insomnia

depression

sweating

violent itching

poor concentration aka brain fog

bleeding problems

high blood pressure

as well as being at greater risk of heart attacks, strokes, blood clots and thrombotic events are just some of the things people with PV face and that’s before any side effects from treatment recieved to manage this condition and take it from me these symptoms titles do not do the effects any justice.

The text books will tell you that sufferers “can” lead a relatively normal lifespan, those same text books point to the fact that most sufferers get it in later life so yes the normal lifespan applies (hopefully) but the younger generations struck down by this probably won’t make it to the new national retirement age.

There is a risk of our bone marrow burning out or this turning into a more aggressive form of blood cancer and when the doctors tell us the chance of this is quite small in comparison... they forget their statistics tell us that there is a 1 in 100,000 chance of us being in that chair receiving that diagnosis in the first place.

For me personally, I have to take medication for this condition that combined with my mental health medication leaves me wide open to infection as the conflict causes agranulocytosis but still despite all the afore mentioned... PV is not a disability?

I have had doctors ask me about my condition and admit they know nothing but somehow the DWP know it’s not life impairing and Still these people are expected to work through if this and are getting claims rejected daily.

We may have a longer prognosis than most poor cancer sufferers but we live with nightmare symptoms and face uncertainty each day... but the difference is PV patients are expected to work through their symptoms